Sunday, November 29, 2015

Physical Therapy Update

We are down to having physical therapy once every 3 months. Through the summer we were still at every month and worked hard to prepare for life without orthotics. In August we had x-rays to check on Ayden Jane's scoliosis at Shriner's and input on giving her a trial out of the orthotics. Everything looked great and she got the go ahead.

This was the first post orthotics visit and I can say Ayden Jane has kept very active for the past 3 months. Jen was super excited to see how great she is doing and there were nearly tears as she summed it up. Jen said, "I feel like we have worked for 8 years to get her to look exactly like this and she has done it. She looks amazing. Her tone and balance and symmetry are blowing me away."

We are so excited and she could point to things that were so much stronger - she feels as a result of swim team. I am not sure what has strengthened what but I do know that she has worked hard at swim team, spent lots of time on the trampoline, played soccer, ridden bikes, walked the dogs and just generally been as active as ever before.

Ayden Jane will have about 2 months off of swimming and soccer so Jen is going to give us a running plan. We just haven't had time to run with everything else so we plan to run during her 'off season'. I asked her to include some goals for distance running like we have done in the past but to also include ideas for speed workouts. Ayden Jane is actually excited about doing it and we will start in 2 weeks when soccer has ended.

Speaking of soccer, Ayden Jane is going to extend her soccer season by 2 weeks by playing with the kids who train and play travel soccer. It is going to be way over her head and I am a little nervous for her. I just want her to keep enjoying the sport and have no intentions of her playing with this group regularly. Ayden Jane is perfectly suited to a rec program. She heard about the chance to play and has a couple friends who play with that group so my fearless child is all in. Wish us luck.

Saturday, November 28, 2015

Happy Thanksgiving

We had a very nice, quiet Thanksgiving. Well, maybe not quiet since Ayden Jane has not been quiet since school let out on Friday.

It started with a nice surprise. Gary worked Wednesday night in the ER but was sent home early since they were not busy. That translated into him getting a good amount of sleep without having to sleep away most of the day. He and Ayden Jane made good use of the time and the beautiful weather. He took AJ and the dogs for a good walk. (We use the dogs as an excuse to walk Ayden Jane pretty regularly.)  After the exercise the rest of us joined them at Dunkin Donuts. Ayden Jane just goes along for the ride there, brings her own snack and sometimes gets a bit of coffee. 

Next on the list was to see if they could find a Christmas tree! They found a great one and by the time they came home, all that was left to do was to get a snack into Ayden Jane and most definitely throw her in the shower!

Holidays can be really rough on families who deal with Prader Willi Syndrome for a few reasons. First up is just the typical excitement that comes with holidays can make all kids a bit crazy. For those children with PWS who get anxious with change or stress, even the fun of a holiday can be more than they can handle. In Ayden Jane this excitement translates into her brain going even more fast and furious. It is both hilarious and exhausting to live with. Kayla asked her the other day about how many thoughts she had in her head. Ayden Jane answered, "Oh, I don't know. Probably about a bazillion."  For us, the key to handling it is getting her out and getting lots of exercise. We all know,or at least we are told of, the connection between the exercise and improved thinking. It is so clear in Ayden Jane. Whether it is getting her out to play before tackling homework or just getting her thoughts to settle and have great conversations during a long dog walk.

Of course, the focus on food is another struggle for many families with Prader Willi Syndrome. We are not completely immune to it, but it is also not a big struggle either. For the Thanksgiving meal Ayden Jane did awesome. She had a little bit of most everything and was thrilled with her giant turkey leg. She managed to eat about half of it and then was full and asked if she could give the rest to the dogs for their 'feast'. Gary and I took Ayden Jane out to the beach because there was a giant full moon and we searched for ghost crabs. It was beautiful and Ayden Jane was sound asleep within minutes of getting home.

Saturday, November 21, 2015

Another good week

Somehow we made it all the way around to Saturday again. I really do mean to write more often but this little one keeps me busy! Well, there are a few other things that keep me busy too...

Today was end of season soccer tournament day. Ayden Jane had such a fun season this fall and is really getting the hang of the game. Well, not so much in her actual playing skills but she is much more aware of what her feet should be doing. Her first game today she had two full field runs with the ball at her feet and one of them was actually in the right direction! She stepped up and kicked the ball a few times and she was just 'into' the game. The second game she did not play so well and was a little spacey. It was a long day at the fields. She had played the first game and then had some peanuts and played on the playground between games. I loved it though, that she hung right by her coach and asked to go back in and really followed the game and cheered when she was out. She had a wonderful time.

The coming days should be interesting. Ayden Jane was 'invited' to come train with the PDC players. Basically, they are the kids (or children of parents) who are more serious about the soccer and train more intensely. Honestly, the invitation was a nicely worded email that made it sound like she was chosen but I'm pretty sure they just sent it to everyone. Either way, Ayden Jane is all in. I am a little nervous because I want her to enjoy it but it will be over her ability a bit and she will not have any idea how to do a lot of the drills or games they do. She catches on to things a little slower than most kids but is determined. I'm just hoping they are patient with her and she completely enjoys it. (and mostly that the girls are nice to her!)

School is still going well. Ayden Jane has been a little stubborn about her spelling words. She learns them pretty quickly and can rattle off how to spell them out loud but does not want to practice writing them. Then she misses one or two on her test and gets really upset because, "but I know how to spell it. It shouldn't be marked wrong..." I think she made the connection this week and is ready to play in shaving cream or something to practice writing them. I think her brain just goes faster than her hand so she messes up when writing it.

Math is still challenging. She totally had the concept of double digit addition with regrouping...well until they taught the kids another method now she is stuck somewhere between the two. Ugh.

All in all, she is still motoring along an average kid in ability and way above average in work ethic, kindness and joy.

Saturday, November 14, 2015

A Good Day

Today was Saturday. It was a good Saturday filled with activity and friends and lots of outside time.

Ayden Jane was up at her usual 6 something hour. She had a snack to tide her over until a more reasonable breakfast hour and Gary, AJ and I all went out for breakfast. She was fired up after breakfast and asked me if she has so much energy because she had a big breakfast. Could be, Ayden Jane could be.

We took all the energy and put it into action. We went for a long dog walk. Which is, of course, code for a way to get Ayden Jane to take a long walk. Just a few minutes after we returned her neighborhood friends came and right back out she went.

Next up was lunch and present shopping because she had a birthday party to attend. It was sweet to see her friends excited to see her and hear the birthday girl tell her mom that she wants to invite Ayden Jane to come play at their house one day. The party was a great, old fashioned play games outside sort of fun. Ayden Jane played tag and hide and seek and red rover. So fun to watch her have a sweet group of kids to play with.

Once we got home and Ayden Jane says: Is it supper time? Me: no. It's only 4:30. Ayden Jane: oh, well can you get me for supper when its 5 something? Don't wait until 6 something because my brain will crash. With that she was off to play.

After her 5:45 supper she watched a bit of TV and fell sound asleep on the sofa. A near perfect day.

Sunday, November 8, 2015


Sometimes I get questions about whether Ayden Jane struggles with _________. You can fill in the blank with one of the many 'joys' brought to us by Prader Willi Syndrome. I'll work my way through a few of the typical ways in which the syndrome affects families. I say families because it is not just the person with PWS that is affected.

First up is food. That's the first one most people ask me about because at age 8, Ayden Jane should be feeling some of the effects of  'the hunger.' Honestly, I don't believe she deals really at all with hyperphasia. That is, I don't believe she is constantly hungry. Her day is not consumed with thinking about her next time to eat ect. I will say that doesn't really feel full like most of us do, so if not taught to understand a portion ect. she would easily over eat. It's an interesting balance and one where we just make food about nutrition. Being sure your body gets what it needs in the right amount to keep energy levels good but not extra because then it just turns into added weight which will slow her down.

Next is anxiety. I'd say this one gets us all. Her anxiety is not so high that it is visible all the time. It more just lurks under the surface and you just never know exactly what is going to cause it to break through. Today is a good example. She was at children's church and needed to use the bathroom. Someone cleaned up her spot and she couldn't find a paper that was apparently important to her. She burst into tears as she walked out. We stepped into an empty room for a minute and I told her to get it together and then she could go back and see if she could look more, or solve the problem with one of the leaders. Another classic time to see it is when she is pressed for time on something. Part of the point of hurrying a child is attempting to get them to have a sense of urgency so they will get with the program. Well, with Ayden Jane, if you hurry her that sense of urgency just turns to a panic that is similar to the book, If You Give a Pig a Pancake. Only in Ayden Jane's case, she always goes through a string of events that ultimately lead to the destruction of the universe.

Socially. Ayden Jane has come a long way on this one. When younger, she struggled mostly because her little brain just couldn't process things fast enough to keep up with the other kids. If you listen, you will realize that exchanges between small children are actually very quick and short. Sort of the polar opposite of the types of conversational exchanges Ayden Jane made when little. On the plus side, she has not really been excluded, just not really included. You know, no body moans because Ayden Jane is in there group, or they don't go out of their way to avoid her. Just that when someone is looking for a friend to do something with, seldomly do they invite Ayden Jane to be that friend. More in an oversight way than anything else. This is an area that Mom could do better and invite friends to come do fun things with us. For now, we are good because she has found a couple neighborhood friends where the friendship is very mutual. I think in the end, socially, Ayden Jane can learn social cues and rules to games and give and take with other kids but sometimes she needs a bit of help to sort it all out.

Behavior. Often times children with PWS have a lot of challenges with behavior. Whether it is the rigidity that makes it so hard to handle a change that comes up during the day or an underlying tiredness that many feel or something in the energy balance of food they have eaten or just the emotional instability that can come with the disorder... take your pick. I would say that Ayden Jane does feel many of these things to a mild degree but is cognitively sharp enough to talk herself through. For example when her schedule is disrupted at school for some reason, she just needs someone to give her the new schedule and she can see how it's going to work. Or if snack is missed in the morning she can plan for herself when a good time to have it will be. We are very thankful that by and large all we hear from school or other places Ayden Jane goes is how well behaved she is.

Attention. Kids with PWS often struggle with attention. In Ayden Jane it is most evident in large groups. She simply cannot screen out all the 'extra' stuff so that she can concentrate on what she is supposed to be listening to. This makes instruction a challenge in whole group at school sometimes. Many kids with PWS end up needing some form of medication to help them focus well enough to keep up with their peers.

Motor Planning/processing speed. Yep. This one hits us. Learning to get her body to do something takes extra work. Ayden Jane cannot easily watch you move a certain way and repeat it. When she tries to climb or do something for the first time it is super slow. With repetition and cuing certain muscles she can learn to do most anything but nothing comes easily and each thing needs to be taught. Additionally, when trying to play sports like soccer, the amount of time it takes for the thought to reach her feet and make her feet move is just too long.

Temperature regulation. This is a weird one. I'd say it doesn't bother her a ton, but when she gets too hot - it's all she wrote. The odd thing is how quickly she overheats when it is cold outside and she is wearing a coat. Something about keeping that heat in throws her thermostat way off.

Decreased pain sensitivity and body awareness. We choose to spin this in our favor :) Ayden Jane will try things without fear and when she falls she can brush it off like no other. The body awareness thing just means our toes are often stepped on, doorways often run into, things spilled and, well you know the term bull in a China shop.

All of these things just add up to a life that is a bit harder to manage. Learning and playing are just a bit harder for Ayden Jane than other kids. Handling disappointment is harder. Excelling is harder. Living with her is harder. She takes a more time to do everything...., our days need to be a little bit more planned, her needs are just a bit more urgent. Basically, as her family, we just always feel that heightened need for vigilance.

I can say, though, that with the added concern and effort comes an amazing joy. Every accomplishment feels like winning a championship. Being a part of a kid who lives life with every ounce of her being is contagious. Yep. she rocks. She is happy. She loves life and is thrilled with all she CAN do and is pretty sure she can do anything if she works hard enough. God has placed such a sense of worth inside her that a confidence just pours forth. She is a walking billboard that says, I am a child of God and He has made me exactly as He wanted - perfect, PWS and all.

First Official Report Card

Ayden Jane is in second grade and at her school this is when "real" report cards start. She gets a number grade for Language Arts and for Math. Personally, I think it is a bit silly to spend the teachers time and efforts with grading students so young but at least they just stick to the two subjects. Science and Social Studies is still the good old fashioned check system. Yep, they learned the skill, nope they didn't...

Now there are a couple of ways for me to look at this transition. I can worry that Ayden Jane gets the very best opportunity to get high grades. I can set it up in such a manner that she gets to go test in a small group setting to she can ask questions as she goes through. I could even put it in her IEP to modify the tests or allow her to retake tests...

My approach? None of the above. I have taken the approach with Ayden Jane that I will allow her to do things with as little help as possible and see the extent of what she can do. This does not work for lots of kids but I find that for Ayden Jane it works best. Mostly because I still tend to underestimate her. I wasn't sure how I was going to approach all this grade stuff until I had a conversation with her teacher. She asked me how Ayden Jane would handle it if she did not get A's? Hmmm. Good question. I wasn't sure of the answer, but I was sure that I didn't want Ayden Jane to be caught up in 'grades' that young. I wanted her to stay caught up in learning. Her approach to school so far has been to do her best and learn. She measures if she is learning enough by whether or not she is learning what she needs to know to go to the next grade.

So, in that simple question of, will she be okay if she does not get A's? One thing I knew for sure was that if I made school about the grades it was going to be a long ride. No matter how smart a child is, getting all A's all the time will make one crazy. So I knew that I did not want to set the expectation in Ayden Jane's brain that A's are what school is about. Additionally, if she got all A's the first time, then it would be set in her brain that all A's would come in every report card. Yeah... don't want to deal with that.

I could go on a rant about society and all kids being rewarded and how everyone is a winner.... but I'll just leave it to say that some kids are A students and some are not and I am totally okay with grades less than an A if it your best work. For Ayden Jane that may be A's at times and it might be C's at times. In the end, who cares.

So for Ayden Jane's very first graded report card, how did she do? She had a B in Language Arts and she had a C in math. She was just 3 points shy of a B in math and she conquered some new territory and worked really hard for that 82 so we are very proud of her. Her teacher gave her the class "Hard Worker" award and if a kid ever deserved that award it is her.

The best part is she is proud of her report card and the fact that she works very hard. She says she hopes she gets on the A/B honor roll next time but mostly she just wants to keep learning. I'd say that's a perfect attitude.

As for the extra help? The time may come but seriously. Ayden Jane just started a new school year - newness always throws her. She is reading well and doing all the Language Arts on her own with zero extra help or help on homework and she got a B!! She worked her tail off in math and is understanding concepts and thinking mathematically pretty well. She always makes mistakes like miss counting and gets things wrong on tests because of that but I know that she understands the concepts and she got a C all by herself. She is in a typical classroom doing the same work as typical kids and is doing great. I'll take it.

Wednesday, November 4, 2015

Happy Halloween

Whew. Halloween has never been my favorite. I'm sort of boring, I guess, but I'm not that into dressing up and I am the biggest chicken on the planet when it comes to creepy stuff. Candy was great as a kid, but as a teacher and parent... not so much. Then throw in a dose of Prader-Willi Sydrome and you have pretty much crushed the rest of anything about Halloween that I might like.

So, how did this year go? Actually, other than Halloween having become a week long celebration, it went pretty well. Ayden Jane was invited to Trunk or Treat which we skipped to go to soccer practice. Next up was a class party which I neglected to find out the menu for, so I just stopped by and worked it out. Then there was the school fall festival Friday night, followed by trick or treating Saturday night and a church fall festival Sunday. Like I said, whew!

The fall festivals are not really big on candy so that is great. A little popcorn and lots of bouncy houses and she's happy.

Trick or treating she actually does really well. She walked a bit more in years past keeping up with Mckenna and her friends but she still covered a couple miles this year. She loves the whole process. Everything from dressing up to seeing what candy she gets to chatting with her friends and seeing what all the other kids are dressed as. Her goal in the night is to collect enough to get a good toy from the Great Pumpkin. Somehow she has gotten it in her head that the more candy she leaves out the bigger the toy. Funny.

It was cute this year as she told her friends about the Great Pumpkin coming to her house. They got excited and asked their parents if the Great Pumpkin would come to them if they put their candy out.

After we got back, Ayden Jane hopped up to the table and dumped out her haul. She carefully sorted - looking for the few things she received that were not candy. Next she selected a few pieces of candy for her siblings. It was really cute, actually, as she called to me to ask things like, "Are Reeses Mckenna's favorite?" (by the way that would be yes.)

After a while it struck me as pretty cool that Ayden Jane was sorting her candy in the next room and her only concern was that she picked out the best 3 treats she could for Kayla and Mckenna. No thought of trying to sneak pieces. No negotiating with me over if she could eat one. No stress about the candy at all. When that task was complete she packed it all back into the canvas bag and put it out for the Great Pumpkin.